Carol Spiker, 76, underwent a reverse total shoulder replacement – often referred to as RTSA – on her left shoulder on March 7, 2024, and has been documenting the lengthy recovery process in a journal. A T7-8 para and single-leg amputee from Wilmington, Delaware, Spiker sustained her spinal cord injury in an automobile accident in 1998, two months after her 50th birthday.

After 26 years of skiing, traveling and living fully, Spiker’s shoulders were shot. “I trashed my shoulders to stay active,” she says. “I decided to do a reverse shoulder replacement because of a speedier recovery, less pain and less chance of a future torn rotator-cuff injury.”

Surgery Recovery

I woke to pain, with a shoulder brace and a Foley catheter. Shortly after surgery, I was given an extra painkiller — my decision before surgery — that would extend relief from pain for another eight to 24 hours. Mine lasted eight hours. I received Dilaudid and tramadol to deal with my pain, which was considerable. After four days at the hospital where I had the surgery, I was transferred to a skilled nursing and rehab facility.

Week 1

The first few days at the skilled nursing and rehab facility were quite challenging, as I sought to deal with pain and to adjust to a new life in a place where most requests for help were met with delays. I spent that first week in bed, quite miserable.

My shoulder brace significantly limited my mobility. Thankfully, my physical therapist and occupational therapist ordered an air mattress for me. I was happy they were concerned about pressure sores. My OT showed me how to stretch in bed and use a squishy ball to help with my grip. My doctor told me not to pick up anything heavier than a coffee cup.

It took me another four or five days to discontinue the tramadol and move to Tylenol. Painkillers are constipating. I had not had a bowel movement in over a week. I was also terribly disappointed to learn that both OT and PT would not allow me to use my shower commode chair, which I needed for my bowel program. I was too unstable. They were concerned about safety. I would have to have a bowel movement in a diaper. This instantly led to a urinary tract infection.

Week 2

PT and OT arrived with a mission to get me into my new power chair. I had used a manual chair for 26 years. I learned what being hauled out of bed in a Hoyer lift was all about. I loved being gravity-free. It reminded me of swimming.

After being lifted into my new power chair, I was then lifted onto a therapy table for OT and PT. I was surprised at how wobbly I was. I spent my time trying to find my balance point.

At some point during this second week, I realized that my Foley was not draining, which brought instant panic. I asked to have the Foley flushed. This became a frequent request. On a Zoom call, my doctor was primarily interested in my stitches. I expressed how miserable I was, and that I was determined to transfer to a better facility, but I quickly learned that I could not leave until I had the strength to actually transfer.

After 16 days and no bowel movement with daily doses of Colace, senna, MiraLAX, enemas and suppositories, I asked to go to the hospital. I was hurting. The hospital repeated the same regime and then finally gave me magnesium citrate, which got things going in short order.

A rheumatoid arthritis flare-up in my left thumb on my second day in the hospital added to my stress levels. The hospital doc put me on prednisone and I soon returned to the rehab hospital.

Week 3

I felt increased frustration with Foley flush delays and getting in and out of bed. I was peeing more than 1,500 cubic centimeters after being flushed. I feared for my kidneys. I was slowly improving with my PT and OT regimens and would have loved double sessions of both, but insurance said no.

Week 4

My X-rays confirmed my new shoulder was in place. I was relieved, as I had been convinced one of my unintended automatic movements in my wheelchair had damaged the placement of my new shoulder. To my surprise, my surgeon removed the brace and lifted a number of the postsurgery movement restrictions.

I felt stronger every day thanks to PT and OT, but my general frustration grew. Catheter flushes were but one of the widespread delays I constantly ran into.

Week 5

With my Foley increasingly becoming problematic, I asked the nurse to remove the Foley. I would figure out how to catheterize myself with my physical limitations. My surgeon gave me the go-ahead to use my left arm. I needed only an aide to lift my leg in order to cath. I was slowly learning how to accept the lacking, often inconsistent help from aides.

I had developed a very bad UTI from the Foley and my bowel routine. This was not a surprise. I am resistant to just about all antibiotics, so my PCP prescribed an antibiotic I had never heard of. I am unsure if it cured my UTI, but for the next nine days I was in isolation.

Week 6

PT continued, but with modification because of isolation. I was able to continue with most of my OT program. Once out of isolation, I restarted core work and practicing transfers, using a BeasyTrans transfer board in PT. I worked on strengthening and stretching my left arm.

Week 7

My surgeon gave the OK to do transfers using my left arm as tolerated and clearance to lift objects, adding a pound a week. With this new plan, I began to use my left arm more frequently but still cautiously. I was surprised by how weak and tight it was. He mentioned that I should be at 80% by the five-month mark.

Week 8

More delays getting help in and out of bed. As frustrated as I was with delays, I was grateful that my insurance covered this facility.

Becoming more independent each day, I was hoping to be approved to do independent transfers. Shower chair transfers, wet to dry, remained challenging.

They exchanged my inflatable bed for a regular bed so that I could practice bed transfers and getting to a seated position from a supine position. Not being able to use my left arm and not having a right leg made this particularly difficult.

My left arm remained very tight and exercises were painful. I found myself asking for Tylenol more frequently, and frustrated because I couldn’t lift my left arm higher than my shoulders. I had a frozen shoulder for three years before surgery and was anxious to talk to the doc about how it affected me.

Week 9

Bed and exercise mat transfers with my board got easier. My good shoulder was bothering me, as it took the brunt of going from supine to sitting position on the mat. OT focused on protecting it.

I was still being lifted into and out of bed, and needed assistance to cath. My OT spotted me as I transferred to my shower commode chair. It was my first opportunity to use the toilet and my second shower in two months.

Week 10

I decided to try to cath myself without help. My success supercharged my determination to go home. I learned what needed to happen before I was discharged: first, social services must schedule in-house PT and OT and order a hospital bed; second, my husband must go through training, even though he’s a pro; and last, I must arrange for home health care for bathroom and shower days.

Week 11

I arrived home before Memorial Day weekend. We had ordered a hospital bed. My sister moved in to help. She is better than the best and was exactly the right caregiver I needed to adjust to being home. Lucky me. Initially, my biggest challenge was learning to drive my power chair in our house. I met with a physical therapist twice this first week, who gave me some basic stretching exercises to begin my new home routine.

Week 12

Worried that that my husband would be exhausted with his caretaker duties, I’d hired an aide to replace my sister, but we soon realized there was not enough for her to do.

My chair driving struggle continued, as I jammed my knee under the counter and knocked the garbage disposal onto the floor. My knee became pretty swollen.

I restarted my monthly Rheumatoid Arthritis infusions and had PT and OT sessions. My core and new shoulder strength continued to increase with added exercises.

Week 13

I was not feeling great at the beginning of the week and then woke on Tuesday with an RA flare. I cancelled PT and OT. Once on prednisone, I began to recover quickly. I did reduced PT and OT regimens for three days but stepped things up after this. I was also noticing bigger problems with my right shoulder. My left shoulder was pain free, but the right was showing signs of stress. My OT instructed me not to raise my right arm above my shoulder.

Week 14

My third visit with my surgeon was reassuring. He cleared me for full-steam-ahead on strength and flexibility work on my shoulder. Stretching for me was limited before my surgery, so it will likely be that much more difficult moving forward. Even though I should expect to gain 80% by five months, the surgeon told me it will be 18 months of ongoing stretching to obtain recovery to my fullest level.

I am now able to cath in my power chair without help. I still prefer to be spotted with shower/commode transfers after a shower, but I am confident with other transfers. My power chair and hospital bed certainly assist with this as they can both be raised and lowered so that I can use gravity to help. When doing shower chair transfers, I use a large piece of a hairdresser cape jammed under my butt and then place my transfer board under the cape. This is a huge help in transferring while wet!

Unfortunately, I had another power chair issue. I re-injured my knee when it was still under the counter and I raised the chair to reach a bowl. I must make friends with this chair.